Be Your Own Advocate: How a Simple Diagnosis Took Six Weeks to Treat

Friday, October 10, 2014

As many of you know, I recently had an operation and it was a complete nightmare. Many people in the US seem to idolize foreign healthcare because it is state run, and while I emphatically believe quality healthcare is a human right, what I received was by no means quality healthcare. I've never been hospitalized in an NHS (National Health Services, for the non-UK folk) hospital before, so I'm not sure if this type of treatment is par for the course. But I will tell you my story--and hopefully you'll understand why a couple of my projects are on a temporarily hold.

(This does contain some TMI, so if you are easily offended by that kind of thing, you may as well click off. But, as most of my readers are women ages 25-45, this is something you may have to deal with at some point in your life anyway, if you haven't already....). Also, this is going to be long...

At the end of August, I went to my walk-in clinic at the local hospital because my personal GP is useless. It takes over 2 weeks to get an appointment, and when you're sick, that is far too long. Instead of waiting for his posse to get their thumbs out, I decided to go to the walk-in center, with a suspected bladder infection. If you don't know me very well, one key feature to me is that I'm always getting bladder infections and about 50% of the time I'm also on an antibiotic treating them. The nurse examined me and decided to feel around on my stomach, and when she pressed in my lower-right quadrant, I felt a pretty bad radiating pain I had never noticed before. She sent me to the doctor, who then sent me up to the surgical unit to assess whether or not I needed my appendix removed. After several hours, it was determined I did not and I went home with antibiotics.

A few days later, the pain began to appear on its own. I had trouble standing up straight and was spending much of my time curled into a ball. As the pain got worse, I decided to make another appearance in my walk-in center. I was told the antibiotics were not working and was changed and sent on my way. The pain, they said, was related to my infection, even though after all of these infections I have never had such severe pain.

About 5 days later, after a night out, the pain got so intense that I had to go back to the doctor--this time the A&E (or ER for the Americans). I was in so much pain and agony that I began to think I might actually die. When the nurse told me it would take 3 hours for a doctor to see me, I burst out crying. Around 6AM, I was finally admitted to the hospital with a suspected severe bladder infection and/or kidney stone.

I stayed in the hospital for four days, where they gave me one CT scan and an ultrasound of my bladder and kidneys. The scans were all clear. When I asked to speak to a gynecologist, I was refused one saying I didn't need to see one. I suspected an ovarian cyst, but I was told it was related to my infection. I was sent home on antibiotics after having simply been lying in the hospital for four days doped up on codeine to numb the pain.

The pain came and went intermittently and I was given codeine to use at home, so I did. But about a month later, the pain became extreme again, and I went to the hospital around 2AM.

Around 10AM, I was supposed to be admitted, but I was made to wait in front of the consultant's office. The pain was so bad that I could not sit up, so I got on the floor and began crying in agony. Several nurses saw me, but they continued organizing the lunch for the patients until I told one of them to come help me.

When I went into the consultant room and he told me that because my bloods were normal a few hours earlier, he would simply send me home with strong painkillers, even though my pain was so bad that I had tears rolling down my cheeks and could not sit up. After reviewing for appendicitis again, he concluded it was probably "nothing" and may be a condition I would experience for the rest of my life. He told me that many women have "stretched" ligaments in their wounds that cause this problem, but it cannot be picked up on a scan.

After reading my notes, he realized I was to be hospitalized and put me in a bed. Nothing was done for me for three days. I simply laid in the hospital where my location was changed twice. The doctors came in after two days and told me they would do another scan, but when I chased it up that night, I was told they hadn't even ordered it. That night, I had severe vomiting and nausea and a fever spike and a doctor was not called. I was simple given anti-nausea pills.

Finally, on the third day, I received the scan which came back normal. This time, they actually scanned my ovaries, but it was incredibly quick and haphazardly. They were more concentrating on the appendix and bowel. The doctors came back, and the senior doctor told me out right that I was nowhere as sick as I originally thought I was. She also told me they may do a laproscopic procedure to see if there is anything inside of me, but I should be warned that it is a risk and it is most likely nothing will turn up. She emphasized several times that she was 99% sure there would be nothing to see inside of me and the surgery would end up being a waste of time and money. However, I insisted, to which she responded with a "maybe." After which, a nurse tried to take my blood and poked me in three places and could not get me to bleed. Finally, it was done correctly by someone else about an hour later.

The next morning, I was told they had decided to remove my appendix as this was the only thing that seemed to make sense. They would go in and remove them if they found nothing else, but if they found something, they would treat that.

Apprehensive, I went into surgery. When I woke up, I was told that I had a bleeding cyst that was causing the pain and my appendix were in tact. As I woke up, I also had a mild panic attack and told the attendees, to which someone in the recovery room said, "She is either panicking or bleeding internally." Who says that to someone panicking?

When the surgery was finally finished and I was awake, I was taken back to my room, where a nursing assistant diagnosed me with PCOS (polycystic ovarian syndrome) when I only had one cyst, therefore NOT PCOS. I never saw the doctors again. I was never referred to a gynecologist in the end, have no follow up appointment, was not given any literature on wound care (only minimal verbal instructions) and was not told how long it would be until I would be able to exercise and resume normal activity. I was also not given a number to call if there were complications with my operation.

In the end, I am really glad I pushed for the surgery. When you're in the hospital, you are at the most vulnerable and sometimes you'll learn that the hospital doesn't really see you as more than numbers on a chart. You have to advocate for yourself because sometimes no one else will. If you get nothing else out of this post, all I can say, is push push push.

Also, if you're wondering about ovarian cysts, you can watch this video that tells a woman's story of her issue with cysts, although hers got to be much worse than mine. However, with the lack of care, I am certain had I not pushed, the surgery would have been much more complicated as the cyst grew. However, it is clear my advocacy pooped out a bit toward the end as I got tired of dealing with the doctors, although I should have pushed further.

And like they say in the video: women are often embarrassed by this subject, but why? It is simply another body part and a very common issue, so it is important be educated.

I love public health care BUT it is totally understaffed and underfunded in the UK. My uncle committed suicide age 30 due to misdiagnosis of his mental health. He had PTSD but was diagnosed as bipolar. They gave him 3 drugs combined that are toxic together and cause extreme clinical depression when taken combined. It was a fatal error and consequently he jumped off of the ferry from Dover to France 2 days after his 30th birthday. We one the court case against the NHS but chose not yo take the payout money as the NHS is in bad enough financial state as it is. Never follow doctors blindly. Never xxxx

Wow, Rebekah, that is horrible. That is amazing of your family not to take the money because you know the NHS needs it--but a horrific story nonetheless. I have been reading a lot of crazy stories about the NHS not getting people simple medicine in time and having them die very preventable deaths. It makes you not feel very safe. Luckily, mine wasn't life threatening, but I didn't know that until it was removed! xx

I feel ya sister. I too always get bladder infections and they're the bain of my life since i was a young teenager. It's such a pain (!) as well that they can only be properly treated with antibiotics.. which means having to get them prescribed.. which means having to be diagnosed beforehand. Any every time it's a constant battle with the nurses to insist i get the stronger antibiotics as the weaker ones don't even touch the infections i get.

I strongly believe you have to be your own advocate in hospitals. I've had idiopathic pancreatitis 8 times now since i was a teenager. The usual people who get this- over 50 alcoholic males- meant i was looked at and determined pregnant the first time i got admitted. Bearing in mind i was in extreme pain (where they inject morphine straight into your bloodstream once you are diagnosed with pancreatitis) and had been screaming at the nurses that at the age of 14 i was still a virgin and could not be pregnant (i'm sure much to the amusement of everyone in the waiting room)- they refused to listen and tried to send me home. It wasn't until a doctor suddenly saw my blood results that were off the scale that they ran after me and my mum who was wheeling me in a wheelchair and gave me morphine straight away and spent a week in hospital. The worst thing is- i still have this drama every time i admit myself into A&E now- which is about once a year. It's gone as far as me getting my consultant to print off a letter addressed to any staff dealing with me in A&E basically saying- if i say i have pancreatitis, give me the damn morphine and stop pissing around whilst the pain gets increasingly unbearable. So frustrating, although i dread to think how much my treatment would have cost over the years if it wasn't free. Swings and roundabouts i guess, but when you're in so much pain it's pretty horrifying when you get treated in such an unpleasant way. I know for sure the first time i was admitted, as it was so long before i was given medication, i was completely out of it and actually hallucinating as i was in so much pain (this was whilst the guy next to me - a drug addict- was being taken more seriously than me- just because i was a teenager and was thought to be complaining of 'pregnancy pains'- i was in no state to be able to fight my own corner and insist on being treated. So glad you've finally got to the bottom of what was wrong even if it was an awful experience!

Gosh, Lizzy, this is awful. And when you're in so much pain like that, it is really really scary. I am so sorry you've had to go through all of this and continue to do so. Sending you lots of love! (And I am glad I got treated too!) xx

Oh my goodness Anna I cannot believe what an awful experience you had D: People get annoyed with me for talking about the NHS badly but they have so many faults it just isn't good enough, I can't believe you kept being sent home and you had to push so much for a surgery that you clearly needed :( I'm so pleased you're ok but that must have been such a horrible feeling waking up and having a panic attack and being met with such an insensitive comment. My mum had a hysterectomy earlier this year and we were really unimpressed with the aftercare, you're so right with what you say about hospitals just treating you like a number!xxx

It is so horrible, isn't it? I went to the emergency room last night as I'm still in a lot of pain and it seems like no one can give me any care. At some points, I feel like I may have died or been on the brink of death and no one would even notice. It sounds dramatic, but I know a lot of people feel that way...especially when you're sick and vulnerable and have to fight the doctors. It is so obnoxious. I am so sorry so many doctors brushed you off as well. Totally rude and unfair. xx

My name is Anna and I'm an author, blogger, historian and American living in the United Kingdom. I have taken a bit of a hiatus from my blogging and writing, but I am happy to be back on track and doing what I love again.